Monday, December 1, 2008

Back to Life

Last day at the hospital; relaxing and watching Baby Einstein.

On my way home with my "I might be little, but I'm tough"t-shirt. And boy is he.

Sorry we've been slow to post, but I am now trying to do what a team of people were doing for little Mac last week. Factor in the sometimes-helpful-and-always-entertaining help of his two big brothers, and we're a recipe for what would be a highly-entertaining reality show. Not sure what we'd call it, but real life doesn't get more real than us these days.

Mr. McKay came home with a small cocktail of drugs to keep him on the mend over the next 10 days. We are still experimenting to find the right balance of pain meds for our little guy. We're not fans of the loopy, glassy-eyed look and his new this-really-hurts cry is too much for a momma to bear. I think we're getting close though--he seemed pretty comfortable most of the day today and spent most of his awake time as his smiley self. He will stay on oxygen until his final post-op checkup on the 10th. Apparently at our altitude, the small flow of O2 he's on gives the heart and pulmonary artery enough of a rest to make a difference in how well they heal. We can definitely do 10 more days if it means stronger working parts.

The poor little man looks like a battlefield. I just can't think about what he's been through for too long or I lose it. It's one thing to see his incision. That scar we expected. But his entire chest, both wrists and ankles, and his neck are absolutely pock marked with small scabs from IVs, tubes, and sutures. I'm sure the smaller marks will go away, but they are there now and for some reason it's those tiny marks that are the hardest for me to take.

But at least we are home. Every little trivial thing today felt wonderful--the dishes, the laundry, hauling out all the Christmas mess. The kids are so excited and their million questions about Santa, his elves, the sleigh, and Ty's constant quizzing of Preston as to the true meaning of Christmas have flooded the house with the magic of this glorious season. As we put up the tree tonight and took the goofiest pictures of the three of them together I knew I already had everything I need this year right there under that tree. Awesome.

Of course, if I were to get something it would be a vacuum. Not just any vacuum; a Dyson DC14 Animal. Oh how I've had my eye on that pleasantly purple dream of a machine. Well guess what was waiting for McKay and me when we piled into car to come home on Saturday?...my Dyson! I mean McKay's Dyson. My whole play for the sucking wonder over the last few weeks has been centered on how important it could be for McKay's health to have the world's most amazing vacuum in our home. Apparently that worked for Matt. Love him. Love welcome home presents. Love my Dyson!

All in all, McKay continues to amaze. He is truly stronger than I am in so many ways. And if we continue to be slow to post it's because I am typing with one hand and holding him with the other. I may never let go again. Much love to all.

Our thoughts and prayers are with the Christoffersen family tonight who suffered the tragic loss of their amazing father today. He was a hero to our son as his Sunday school teacher last year~and his example as a sweetheart and father will be always remembered and sorely missed. Thank you for sharing your love with us.

10 comments:

Now you really can cut back to only one vaccum session each day!! Or maybe not, you'll be so excited to use your new toy you won't stop. You deserve it! Thanks for the update, I've wanted to call but figured your cute boys would be keeping you very busy. All the girls at the gym say Hi and have been so concerned about little Mac. I'll call soon to see what I can do to help out!AmyP.S. Mac looks cute in the outfit I gave him!

Hi Mind! Sorry I bugged you to post, but we just wondered how everything is going. Mac looks great! He is such a doll! I just love those cheeks! Yipee for the Dyson! We know how much you like to vaccum, what a thoughtful and great gift Matt! I have one and love, love, love, it! We love you and maybe we could get together in a couple weeks for Chrsitmas? with the Johnson's too! Let me know if you want to. Love, Jaci

You are so great! I have a Dyson and I can tell you one thing...you have just received a fantastic gift for your whole family. Good going Matt! I am so happy to hear that you are home and starting to enjoy the holiday season. McKay looks great and it sounds like he is just being loved every second of the day. What a tough guy. You are so great to keep this blog going for him to read in the future to read, as well as for the rest of us. Please let me know if there is anything I can do to help you out. Have a nice day holding that miracle baby! Your pictures are so cute! Thanks for sharing!

Look at those rosy cheeks. Matt told us he almost looked sunburned! What a great thing. He sure has been through more than his fair share and you have too. Did we really agree to this stuff before we came?

Congrats on the new vacuum. I may need to check that one out. I am also becoming an experienced one-handed typist, not a bad thing. Enjoy your holidays with your sweet boys!

Welcome Home little Mac! What a little precious trooper he is! I always look forward to reading your updated posts, it's so nice to read how well the little one is doing! All three boys are adorable! Love the pic under the tree! And your so right, you have everything you need right there! Although I must say I'm jealous of your new vacc! Now I want one! .....I will keep praying for you all to keep receiving great news and for little Mac to keep strong! GOTTA LOVE THOSE CHEEKS! :)

Congrats on your Dyson! I would love one of those! I'm so glad to hear Mac is doing OK. I had a dear friend just email me to tell me she received the news that her baby girl has a heart defect and will have to go straight to surgery upon arrival...would it be OK if I give her the link to your blog? You are such an inspiration...I think it would be great for her to see your story.Annie

Mindi, your post brought me to tears (especially the part about typing with one hand and not letting go of your boy). I want to echo what everyone else has said: he is gorgeous (as are your other two) and you are incredible. That little guy couldn't have been born into a better family. Please know that I'm including you and your family in my prayers. XO Katy

Just wanted to let you know the marks begin to fade over time. But if having my son scared than not having him. I will take him scared any day. I am glad McKay made it through surgery. Merry Christmas to your family.

Live. Laugh. Love.

About McKay

Mr. McKay is a miracle. He was diagnosed with a soup of congenital heart defects while still in utero including: double inlet left ventricle (DILV), Transposition of the Great Arteries (TGA), a large ASD which has now been modified to create a single atrium, pulmonary atresia, and dextrocardia. He has undergone a series of three open heart surgeries to reroute his plumbing into a flow more likely to meet his growing body's demand for oxygen. He is post BT Shunt (August 22, 2008) and post-Glenn (November 25, 2008), and most recently traveled cross country to have the Fontan procedure at the Children's Hospital of Philadelphia (July 9, 2010). Today, McKay is a growing near-three-year old challenged with developmental hurdles we are anxiously trying to help him overcome. McKay offers heart baby hope of the most robust proportions. This blog chronicles our adventures.